About HIS Breast Cancer Awareness

Harvey's Story

"Sir, You Have Breast Cancer..."

 

October is Breast Cancer Awareness Month and the anniversary of a time in my life I will certainly never forget.

 

Years ago, I had no interest or concern with Breast Cancer.  I was a 40 year old man who had a healthy wife and family. But in 1995 my mom was diagnosed with the disease. One Month Later, my little sister, at the age of 37, was also diagnosed with Breast Cancer. Although I was concerned for them, I had no idea what they were personally feeling or going through.  A few years prior my mom’s sister, my God-Mother went through complete bi-lateral mastectomy surgery for her breast cancer.

 

Separate but together, my mom and sister went through surgery and treatment.  Still, and possibly because I was living in Upstate NY and they were in Philadelphia, I had little comprehension of exactly the type of mental anguish and turmoil that was consuming their daily lives. But in October 2008, I suddenly found out!

 

My Phone Rang and the voice on the other end said, “SIR, YOU HAVE BREAST CANCER”.

 

Very few people even know that men can get Breast Cancer. It’s rare. One of the rarest of all the male cancers, but it does exist. BELIEVE ME, IT EXISTS. There are huge obstacles being a man with a “woman’s disease”, and it goes way beyond the normal stress and tribulations that consume all cancer patients.

 

I am not embarrassed to have Breast Cancer. Why should I be? I do have some ‘so called friends’ who found it comical or humorous and may consider me less of a man, but from day one, I have never viewed my disease as anything more than a life threatening-life changing event. In fact I talk about it and continue to talk about it with anyone involved with me on a personal level.

I am not looking for sympathy or compassion. I am seeking and hoping for awareness and a better understanding regarding the male aspect of this disease.

I have been through Surgery (a complete mastectomy of my left breast). I have been through 3 ½ months of Chemotherapy. I have been through the physical pain and the mental anguish all cancer patients endure.  At this moment I am disease free.  But, like all cancer patients, I live day to day with the fear or recurrence.

 

Most people don’t know a lot about Breast Cancer. They know it’s a very visible cancer and that it strikes women of all ages, backgrounds, races and religions.  They know it is wise to have mammography screenings once a year and to be alert enough during self-examinations to immediately report any noticeable changes or lumps to their breasts.

 

What the average person doesn’t know is that breast cancer is a hormonally driven disease. The Cancer cells thrive on Estrogen and Progesterone to feed them and help those cells grow and spread, ultimately invading primary organs. The surgeries and treatment options are designed to remove the cells and to keep whatever existing cells we have floating around in our system from feeding on these hormones that they need to survive.

 

THIS is where the ultimate problem lies for a guy with a female disease.  I found out the hard way.

 

Men and Women produce completely different levels of Estrogen, Progesterone and Testosterone.  Tens of thousands of Women are diagnosed every year with Breast Cancer.  With so many women being diagnosed, having the disease, researchers have been able to utilize many, many studies to help provide treatment options.  All of this research has assisted with improving the survivor rates, but the herein lies the problem with a Man.

 

THERE ARE NOT ENOUGH MEN WITH BREAST CANCER, FOR RESEARCHER’S TO ADEQUATELY UNDERSTAND HOW THE DISEASE FUNCTIONS AND PROGRESSES IN A MALE’S BODY.

 

There are so few comprehensive Male breast Cancer studies it limits the medical profession’s choices for treatments.  When the medical research is scarce or unproven, the doctors revert to what they know best.  How to treat a woman with Breast Cancer.

“Well, if it works pretty well for a woman, we will just treat HIM, Like HER”.

 

I have experienced some of the most ridiculous and uncomfortable situations over the past years.  I have had some extremely laughable situations in addition to those where you just shake your head, smile and attempt to move on.

 

Here is how it began for me. Upon discovery of a lump, directly under my left nipple, I had to have a mammogram. Mammogram equipment is not designed to screen Male Patients. (although it should be and men SHOULD BE SCREENED if they are high risk).

My Mom, My Sister, My Aunt and now me, all carry the BRCA2 Mutation that causes some breast cancers. Because of this, my two sons,  and my sister’s three sons should be able to be screened annually, just as any woman is. Unfortunately, most health insurance won’t allow the coverage, since the disease is considered a “rarity”. The insurance will cover a mammogram , ultra sound, or MRI, once a Doctor has confirmed a problem. Often times, this is too late in the process.

 

Post Mastectomy surgery, I am just as deformed as a woman, but I don’t have the option to “fill up my bra” and balance my chest. While at the beach or pool, I have the choice of keeping a shirt on while swimming or deal with the uncomfortable feeling of having people stare at me because of a missing left breast and nipple. I could opt for reconstructive surgery, but frankly right now, more surgery isn’t high up on my “things to do list”.

 

Every follow up visit to my Oncologist commences with a four page form to fill out and update my progress and condition. On this form I need to answer questions pertaining to my disease. Questions include physical attributes, such as any new lumps?  Mental questions about feelings of depression. Personal questions about sex drive, appetite etc.  All of these questions are fairly normal and important items.  Often I will walk in with my wife and the reception staff and other patients, will “assume” that I am there supporting  her, and what “she” is going through.

 

THEN, I have to answer questions about whether I’m “experiencing any vaginal dryness”.   When was my last period? Questions about my husband?  I am supplied a diagram of a woman with 36 C breasts and ask me to draw or outline any points of concern! How difficult could it possibly be to create a form that is for a man and not insulting?

 

These are minor and oft times just offer a chuckle or two.  The real concerns during treatment are how to utilize the drugs that are essential to my survival.

 

The surgery decision was the easy part.  As a man, there isn’t enough tissue to perform a lumpectomy.   In my case, if I was a woman, I would have had the option to have a Lumpectomy. By the time you extract the tumor and surrounding tissues to produce “clean margins” you have pretty much used up 80% of all the breast tissue. To be thorough, the surgeon needs to clean it all out. I was fortunate to have noticed the tumor before it spread into my lymph system. (This is referred to as “Node Negative”)

 

Post surgery, an Oncotype test performed on the cancer tissue, showed a fairly aggressive form of cancer. I was informed that although no visible spread or metastasis was evident, the possibility existed that some cells could have spread into my blood stream and could show up “anywhere” in my system. Chemotherapy would help to control that spread, by killing off those transient cells.

After three different Oncology consultations that resulted in three different recommendations regarding what type of Chemotherapy treatment, I had to become my own personal advocate.  With the help of my wife, my sister and hours upon hours of research, I chose the regimen that I was most comfortable utilizing.

 

We also need to understand how important the “spouses” are in the Breast Cancer process. Every decision I made came after deep discussion with my wife.  We all need to understand and especially our employers need to understand that the wife, in my case and the husbands’ in most of the other cases, go through all the stress and fear that the patient is experiencing. Cancer is a FAMILY DISEASE. Every close member lives through it and with it.

The decision surrounding Chemotherapy is very difficult and extremely mentally draining since the “wrong” decision, can mean the ultimate finality. You need to balance the strength of the drugs they are intravenously injecting into your blood system, with the debilitating effect each med will have on your immune system. I engaged three different Breast Cancer Oncology specialists in three different regions of the U.S.  All three are extremely respected members of their profession and all came with outstanding credentials.

The first Oncologist was from my hometown, and the University of Rochester- Wilmot Cancer Center.  Another, who I happened to run into by chance during a business trip, was from the Dana Farber Cancer Center in Boston.  The third Oncologist is based in Southern California near the home office of the company I work for.

 

It is still amazing to me, that three proven medical professionals would have such differing opinions.

 

The one thing I found out about Cancer and Cancer Treatments is that NO ONE KNOWS ANYTHING FOR CERTAIN! It’s all odds, percentages, and which study THAT Doctor feels is most likely to match your particular circumstance. Herein lies the problem for a male, since almost every study is done with women! The rate of recurrence is highly influenced by hormonal factors, and as I pointed out before, Men and Women produce different levels of these hormones.

 

After Chemo, the next part of my ongoing treatment was and continues to be the Anti-Hormonal Therapy.

 

There are now two key drugs on the market for almost every breast cancer patient.  Tamoxifen, which has been around almost 20 years, works by fooling the cancer cell into thinking it has enough Estrogen or Progesterone and the cell’s receptors ultimately repel the hormones. With no hormones to feed the cells, the cells can’t grow, ultimately dying off. The second drug, fairly new to the fight (about 5 years or so) is Arimidex.  Arimidex works completely differently, as it inhibits the body from manufacturing Estrogen or Progesterone. If the body is not making the hormones, there are none in the system for the cancer cell’s receptors to latch on to. Same end result, no nourishment for the cancer cells.

 

THE MALE vs. FEMALE ISSUE

 

Basically every study done for the past 20 years on these drugs has been done using women. (  Once again, not enough men to participate) There exists a little more evidence that Tamoxifen works better for men, mostly because it has been around a lot longer. Five years in a medical research study is basically considered an infancy.  We’re seeking long term survival here, or at least I am.

In the case of my two primary Oncologists, one recommended Arimidex and one recommended Tamoxifen. Once again, trial and guesswork comes into play.  Now, I HAVE TO DECIDE WHICH MEDICATION TO TAKE! Since men and women manufacture totally different amounts of these hormones, and because “they are not certain” how the testis and their production of hormones are affected by Arimidex, I chose Tamoxifen for my treatment.

 

As the son of Conservative Jewish Parents, growing up in Northeast Philadelphia, I often felt pressured that I needed to become a Doctor. You don’t make your Parents any prouder than to have them be able to boast, “MY SON THE DOCTOR”. They had me convinced until my second year of college at Temple University, when I figured out that I DIDN”T WANT TO BE A DOCTOR.

As fate would have it, one of the primary reasons for my contracting this disease, was probably because I was born Jewish. Ashkenazi Jewish descendents posses some of the highest concentrations of BRCA 2 mutations.

 

This disease is running rampant throughout our society and the numbers are increasing every year.  I have researched the causes and effects and how societal habits play a major part in the formation and recurrence factors. How our diets and lifestyles have huge impact on the development rates and survival statistics for Breast Cancer.  Male breast cancer is also increasing by similar percentages, but still remains rather insignificant compared to female breast cancer. (Unless it is you or someone who loves the man who has it.)

 

A pure example of this is how refined sugar and white flour, both of which are consumed at ridiculously high levels in the U.S., play a major role because of their negative effect on our immune system and its ability to fight the cancer cells we all have floating throughout our bodies.

 

We all know or have heard that Green Tea and more vegetables could have a positive effect, but such little pure research goes into food as a cause or benefit.  The drug companies won’t spend the funds in this area, since you can’t “patent” brussel sprouts or the spice, turmeric. (Both are very good cancer fighting agents.) But, believe me, these drug companies do know how important many of these foods are in fighting the disease, and utilize their studies to match synthetic drugs to perform similarly to these foods.

 

OCTOBER IS BREAST CANCER AWARENESS MONTH:

 

There are only 12 months in a year and the fact that one entire month, October, is delegated as Breast Cancer Awareness Month, should tell us all how widespread and debilitating this disease has become in our society. When famous people contract the disease, it brings a little more light and more importantly, Dollars for Research. Robin Roberts from ABC News, documented her trials and tribulations. Phil Mickelson’s Wife and Mom were diagnosed and he took a hiatus from the PGA Tour to support them. Both, I am sure, helped to increase the donations for research.

 

I am not famous or a celebrity, nor am I a person that the general society cares to know much about. But I am not alone. There are many men who are living with Breast Cancer or have died from it. Many more may be about to find that they too have a disease they never thought or figured they ever had to worry about.

 

My goal is to bring to light that this dreaded disease, does In fact, find some men.  One of the main reasons the survival rates for men with breast cancer are lower than women, is the fact that men don’t see the warning signs or ignore them, and men are not able to be regularly screened. The other main reason for lower survival rates, in my opinion, is the lack of research and studies involving men.

To all men, but especially to those where a family history of Breast Cancer may be prevalent, BE AWARE! If you notice any changes in your nipple area or sensitivity/ soreness, Do Not Ignore Them! Get any concerns, checked.  You can insist on a Mammogram or MRI to confirm any Lumps or bumps. Don’t let the insurance companies bully you into thinking that it can’t happen to you. It Can.

If this disease does find you or someone close to you, then my advice is to learn as much as you can about your particular circumstance and make decisions based on Knowledge rather than on Fear. Trust your doctors, but understand that they are just “practicing Medicine” and practice doesn’t always translate to victory. 

 

Personally, I feel great these days. I have worked extremely hard to fight the disease and get my body back into shape where it will continue to fight the possibility of recurrence. I no longer drink alcohol except for small amounts socialy or outside of a glass of Red Wine with dinner on occasion. (Red Grape Seed Extract-Resveratrol - has proven positive benefits). Alcohol is a carcinogen and contains high concentrations of sugar. I no longer eat chicken, eggs or drink milk that isn’t organic (hormone / antibiotic free), as the hormones feed the cancer cells. I walk vigorously for 3-5 miles, five or more times per week. Exercise helps the immune system to fight the micro-cancer cells all of us have floating throughout our bodies.  I eat fish in lieu of red meat and I take a wide variety of immune system building vitamins, as they are also part of my plan.

 

My younger sister and mom also subscribe to a similar regimen. It’s not just for men, it is for everyone.

 

Together we have formed the HIS BREAST CANCER AWARENESS FOUNDATION.  (H.I.S. happens to be my initials)

Our goal is to make society more aware that this disease does exist for men and to find a way to force the medical institutions and insurance companies to screen those who may be at risk. Awareness will lead to more research dollars. More research will hopefully lead to finding the detailed hormonal factors that influence the growth of the disease in men.  Maybe, some day, we will find a cure.

For now, I just encourage all to be aware and to think about what they are putting into their bodies.

 

- Harvey I. Singer, Honeoye Falls, NY

 

Medical Advisory Board

Our Advisory Board is made up of professionals who volunteer their time to review, supply and confirm the information available through HIS Breast Cancer Awareness is accurate and up to date. With the assistance of this board, we are able to provide reliable information to assist our readers both through our web site, print and various publications. Learn more about the HIS medical advisory board here.